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Specialist in the a.m. What Qs do I ask?


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Help me be prepared. . . . .

 

My dd7 has been "diagnosed" with some kind of slow growth something-or-other. Her regular pedi wants her to see an endocrinologist. It's taken a YEAR to get an appt, but the day is tomorrow.

 

I'm pretty sure she has ketotic hypoglycemia. It fits her symptoms. She's growing now, at a regular rate, but stopped for the 18-24 months she had the symptoms.

 

So. What do I do? How can I prepare for this appt? I'm trying not to be freaked out. . . . . but I really DON'T think she has a growth hormone issue, and don't want her to go through horrible testing. . .

 

I don't know. I'm not making sense.

 

Give me some advice, will you?

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Hi Heather,

We have been there and while I can't suggest any specific questions I can tell you what our first visit was like.

 

During our first visit DS2 was examined and I was asked a lot of family history questions as well as questions about DS2's eating habits, urination frequency, thirst frequency, and activity levels. The doctor talked to us about DS2's size compared to growth charts and his predicted adult height based off of his size at that time. He asked me dh's height and showed me where DS2 should be on the growth curve based off of parental height. He also asked if there was a family history of abnormally short stature.

 

Based off of the results of the examination the doctor ordered a few tests:

- hand xray to determine bone age

- blood panel

- thyroid

- celiac disease blood test

- blood sugar

- growth hormone stimulation test

- ACTH stimulation test (tests adrenal glands and cortisol levels)

- MRI of the pituitary gland

 

I know it sounds like a lot but most of it was done in one visit. The growth hormone and ACTH stimulation tests are done at the same time via IV. Prior to administering the medication for the tests they drew the blood for the rest of the blood work. During the test we went to another office in the building for the xray. The IV was a piece of cake. Unfortunately we had to repeat the ACTH two other times so DS2 was an old pro at it.

 

I found the doctor explained everything very clearly during the initial exam, I hope you have a similar experience especially after waiting so long to get an appointment. Good luck tomorrow.

SJ

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Write down all the pertinent information, including dates tonight. Write it in time line fashion keep a copy for yourself, give one copy to the doctor. It is easy to get lost in the doctor's questions and forget details. if you have copies of the medical reports, charts/graphs, keep a copy for yourself and give the doctor a copy. If you are taking medical records with you, and do not already have a copy of them for yourself, ask the office staff to copy them and give you the originals.

 

 

Write down any questions you have. Take pen and paper with you, to write down any questions you come up with at the appointment.

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Helpful, ladies. Good to know I'm on the right track!

 

I don't know if the pedi's office has sent over charts. I sure HOPE they have, but I forgot to call today and confirm that :glare:

 

She's already had everything tested except for the adrenals and growth hormones. Poor baby - she was in tears tonight, thinking about having "shots" tomorrow. And I really DON'T think it's growth hormones - she has every indicator and symptom of it being ketotic hypoglycemia, and indeed has started growing normally for the past year. I just wish I could avoid her having those extra tests. . . . . . sigh. . . . . . .

 

Off to keep working on my timeline and questions.

 

Anybody else have a kid with ketotic hypoglycemia? Just curious.

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Helpful, ladies. Good to know I'm on the right track!

 

I don't know if the pedi's office has sent over charts. I sure HOPE they have, but I forgot to call today and confirm that :glare:

 

She's already had everything tested except for the adrenals and growth hormones. Poor baby - she was in tears tonight, thinking about having "shots" tomorrow. And I really DON'T think it's growth hormones - she has every indicator and symptom of it being ketotic hypoglycemia, and indeed has started growing normally for the past year. I just wish I could avoid her having those extra tests. . . . . . sigh. . . . . . .

 

Off to keep working on my timeline and questions.

 

Anybody else have a kid with ketotic hypoglycemia? Just curious.

 

Poor thing. I am doubtful they will do any testing during the first appointment. Perhaps she won't need the stimulation tests, it sounds like you have different circumstances than us. I hope you are able to find some answers tomorrow. :grouphug:

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